Morten group seeking info

[Amw66]

Morning coffee break has found this on twitter.
As a relative newbie things always surprise me - has this not been done before?

 

[NelliePledge]

Slightly confused given their links to ME Association why they are reinventing that wheel when MEA have done a lot of work on collecting people’s stories.

 

[obeat]

It may be to use in their social media campaign to raise funds.

 

[MEMarge]

There may also be issues with privacy/consent.

For example, I understand that the photos of people with ME, collected by MEA cannot be used by other organisations, as when they were supplied it was "for use by MEA".

 

[NelliePledge]

There may also be issues with privacy/consent.

For example, I understand that the photos of people with ME, collected by MEA cannot be used by other organisations, as when they were supplied it was "for use by MEA".

Right but it would be easy enough to contact them to ask if they agree to use by the Morten group and a lot less time consuming than creating a whole new set of stories.

 

[Kitty]

It may be to use in their social media campaign to raise funds.

The fact that they're saying they'll change people's names suggests this is probably the case. If they wanted them for research purposes, it'd make more sense for them to approach the MEA, as @NelliePledge says.

 

[Trish]

I've replied on Twitter:

 

[Sly Saint]

what happened with this?